His second appointment was on September 23, 2015, and like the first, he just had blood work done and a visit with the doctor. I was able to go with him this appointment so I could talk to his doctor and nurse. (No more relying on him to face-time me!) His results were good: White count was 2.75; ANCs 2.42; Hemoglobin 9.6; Platelets held steady at 70,000.
While his numbers are steady and stable, they seem to have reached a plateau. I discussed these feelings with the doctor and research nurse, asking if his numbers can still go higher at this point or if this was the best they were going to get. The answer was not as clear as I had hoped. Basically, anything is possible. So, there is a chance that they can continue to increase.
I asked about a broad general comparison of how the other patients in the study at Cleveland Clinic are doing. Apparently there are 10-12 people on the study there now, but none are having as good of a response as Todd has had. Many are having a difficult time with the side effects. The age of patients range from age 39-70+. Todd's results, in my opinion, have been great! No transfusions and his increased immunity have been an answer to prayer. He still suffers from some nausea, fatigue, and diarrhea. The increased bilirubin is also there, but not as inhibiting as the other side effects.
I made sure the doctor had a good look at him since he seems to have picked up a virus that is going around. Two of our kids have seem to have picked it up too. He looked alright and she did not feel that putting him on antibiotics would be of any benefit. He is still taking his antiviral medication once per day. We were told to just to watch for symptoms of fever and to be careful not to take anything that could mask a fever.
I also asked how the study was doing overall and if there was any new data, but there has not really been anything new since some findings in June, 2015, which I will review here. Nothing new will be out until the American Society of Hematology (ASH) Convention in December 2015.
From what I have read, as of June, 2015, the patient on the drug the longest at that point was 15 months. As this drug mainly targets Acute Myeloid Leukemia (AML) patients, it was interesting for me to see the response rate in patients, like Todd, who have MDS. According to an Agios Press Release from June 12, 2015, "of the 14 patients with myelodysplastic syndrome (MDS), seven achieved an objective response, including two CRs, one CRp and four mCRs." (Agios, June 12, 2015, np). CR is complete remission. CRp is incomplete platelet recovery. mCR is marrow complete remission. So, I would say that Todd is likely in that 7 who have achieved an objective response.
I'm anxious to see what the results will be in December, when the next set of numbers are released. I listened to an audio interview with Chris Bowden, M.D., Chief Medical Officer with Agios Pharmaceuticals at the Caaccord Genuity 35th Annual Growth Conference, August 12-13, 2015, Boston MA. He said that AG221 is the first drug to be approved for AML in several decades (Bowden, August 2015, minute 3:45). He describes the urgency for relapsed patients to receive treatment, as their condition is in "dire straights" and I couldn't agree more. That's exactly how I would have described Todd's condition earlier this year.
Bowden continues to discuss AML later in the interview, stating that there is a real possibility of doctors sequencing every patient's genome at the time of diagnosis to see what kind of gene mutations they are dealing with. Then, the doctor can evaluate what drugs are out there that can be used to treat that specific mutation. He feels that doctors will be trying to determine the IDH status of their patients at diagnosis and in treatment. (Bowden, August 2015, minute 19:30-26:07).
You may be asking why all the information about AML when Todd has MDS. Well, the two are closely related blood cancers. The main difference is the amount of blast cells used to classify them. About 30% or roughly 1/3 of all MDS patients will progress to AML. The diagnosis of AML is given when the patient has blasts cells of 20% or higher. Thank God Todd's blast cells have never reached that level.
I just wanted to give this quick medical update and will discuss personal notes in a later post. Thanks.
References:
Agios. Press Release. June 12, 2015. Web. Retrieved from: http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=2058805
Minute 19:30+
http://www.businesswire.com/news/home/20150612005174/en/Agios-Announces-Data-Ongoing-Phase-1-Dose#.Vgg9k5frTm4
http://www.reuters.com/article/2015/06/12/agios-leukemia-idUSL1N0YX2TI20150612
longest MDS patient on drug 16 months in June 2015
